Father sues Blue Cross for denying nursing care

Sept. 03--Magazine cutouts of Michael Jackson, stylish young rockers and characters from the "Twilight" series cover the walls of Stephanie DiCara's bedroom in North Barrington, where a nurse watches closely over the ventilator that keeps the young woman alive.

But if her father loses a legal battle with an insurer over the costs of her care, DiCara fears she could be forced out of the room she's decorated to match her interests.

"I try not to think about it, because it stresses me out," said DiCara, speaking in bursts timed with the cycles of the ventilator.

DiCara, 23, was born with a neurological disorder known as Charcot-Marie-Tooth disease. She had quadriplegia at age 11 and lost the ability to breathe on her own in 2011. One of her biggest fears is that the ventilator's steady rhythm will stop, leaving her breathless and voiceless and dead within minutes.

Her insurer, Blue Cross Blue Shield of Illinois, does not want to pay the approximately $450,000 per year it takes to keep skilled nurses at her side 24 hours a day, arguing that someone with less training could operate the ventilator and perform the other tasks DiCara requires.

On Tuesday her father, Mark DiCara, sued the insurer's parent company, Health Care Service Corp., in hopes of forcing the insurer to cover the skilled nursing care. The suit argues that the care falls under her policy and that without it she would face immediate hospitalization or "certain death."

The lawsuit, filed in U.S. District Court in Chicago, says two doctors who assessed DiCara have vouched that monitoring the ventilator, administering her medications and cleaning the pieces of equipment that help her breathe require continuous skilled care. Care in a nursing home would be inadequate, according to the suit.

If the machine were to stop without someone in her room, DiCara would not be able to call for help, Niles-based pulmonologist Dr. Arvey Stone said in an interview. Her fear of the machine stopping also causes her anxiety, for which she takes medicine, according to a letter Stone sent to the insurer on her behalf. That anxiety would increase without continuous care, he said.

The suit states that DiCara was released from a hospital in September 2011 after treatment for respiratory failure. In each of the next two years, Blue Cross Blue Shield told DiCara's father in writing that it would not pay for continuous nursing care. He twice successfully appealed the insurer's decision to a third-party reviewer as allowed by state law.

But this year the insurer again denied payment -- and this time a reviewer agreed with the decision.

"This is wrong," said Mark DiCara, an attorney.

DiCara is receiving care from a combination of registered and licensed practical nurses, which respectively cost $55 per hour and $48 per hour, said Tamara Muller, owner of Independence Plus, the company providing the nurses who take care of Stephanie in 12-hour shifts.

For now, Muller said, the company is covering the costs of the care. She said she expects the insurer to reimburse the company if a judge sides with the DiCaras.

"Yes, this is a very expensive program for nurses around the clock, but that's the way it is," said Robert Farley, the attorney representing the family in the suit.

Farley noted that in cases where the insurer does not pay for medically complex care, the costs often are shifted to the state, adding to the burden on taxpayers.

A spokeswoman for Blue Cross Blue Shield of Illinois said the company does not comment on pending litigation.

The insurer has been sued before for denying care to patients with complex medical needs. The federal government and the state of Illinois filed suit contending the company denied claims from 2000 to 2010, which the state said shifted costs of skilled nursing to a special Medicaid program for those who need complex care. The state also alleged that the insurer improperly influenced the outcome of the external review process.

Blue Cross Blue Shield settled the suit in 2011 for $25 million without admitting any wrongdoing.

In DiCara's case, the insurer suggests that her policy would cover the skilled nursing she is receiving only if improvement were expected in her condition. But letters that Blue Cross Blue Shield has sent to DiCara classify the care she now receives from nurses as "long-term, maintenance, respite and custodial."

The insurer doesn't suggest that DiCara should go to a skilled nursing facility or a hospital but does state that a less-qualified caregiver could look after her.

"Family caregivers and home care attendant caregivers may be trained to aid in such tasks as suctioning, respiratory treatments, and management and monitoring of ventilator equipment," the insurer says in the letter.

Mark DiCara said he thinks the machinery is too complicated for him to operate, noting a thick instruction manual that came with it.

"I'm willing," he said. "I just don't have the aptitude to do it."

The 2010 Health Care External Review Act gives recourse to Illinois patients who have been denied coverage by an insurer. After denying services, the insurer must notify the patient of his or her appeal rights, including an external review, according to the state law.

Once a request for external review is filed, the director of the Illinois Department of Insurance selects a reviewer at random from a list of approved reviewers. The law requires the insurance company to pay for the review.

The external review is final under the law, but it allows for patients to seek relief through the courts.

DiCara, who has enough mobility in a finger to operate an electric wheelchair if a nurse places her into it, said she spends most of her time on the Internet. She follows members of the band My Chemical Romance on Facebook and Twitter, finds designs for her weekly outing to a nail salon and reads about other celebrities she's interested in. She said she also takes an online course in "abnormal psychology," pursuing her interest in crime dramas.

Stone said it is difficult to assess how her condition will progress but that she could lose eye movement or the ability to swallow.

Farley has filed motions requesting that a judge order Blue Cross Blue Shield to pay for the nurses until the suit is resolved.

This story was produced in partnership with Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

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